Offering support
to patients living
with ALS and
their caregivers

A patient being diagnosed with ALS could go through a complex range of emotions.

During the delivery of an ALS diagnosis the physician has the opportunity to guide and inform the patient living with ALS—and their family or caregivers—of the progression, impact and possible causes of their disease. Also, the options of genetic testing, counseling and the possibility of clinical trial enrollment can also be discussed.1-4

No-charge genetic testing for patients living with ALS and their families

Sponsored by Biogen and offered through Invitae—a genetic testing provider—ALS Identified is a no-charge genetic testing program for amyotrophic lateral sclerosis (ALS). The program will test for mutations in more than 20 genes that are linked to ALS.

Counseling and communication

Delivering a diagnosis of ALS is never easy. Read about Dr. Bucelli’s views on genetic testing, clinical trial participation and counseling of patients living with ALS and their families when a diagnosis of ALS is given.

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Navigating difficult conversations in ALS

When diagnosed with ALS, a patient living with it needs answers. Physicians have to ensure that those living with ALS get the right information and support, and that their expectations are realistic.

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References: 1. Benatar M, Stanislaw C, Reyes E, et al. Presymptomatic ALS genetic counseling and testing: experience and recommendations. Neurology. 2016;86(24):2295-2302. 2. Roggenbuck J, Quick A, Kolb SJ. Genetic testing and genetic counselling for amyotrophic lateral sclerosis: an update for clinicians. Genet Med. 2017;19(3):267-274. 3. Kiernan MC, Vucic S, Cheah BC, et al. Amyotrophic lateral sclerosis. Lancet. 2011;377(9769):942-955. 4. Brown RH, Al-Chalabi A. Amyotrophic Lateral Sclerosis. N Engl J Med. 2017;377(2):162-172.

References

1. Benatar M, Stanislaw C, Reyes E, et al. Presymptomatic ALS genetic counseling and testing: experience and recommendations. Neurology. 2016;86(24):2295-2302. 2. Roggenbuck J, Quick A, Kolb SJ. Genetic testing and genetic counselling for amyotrophic lateral sclerosis: an update for clinicians. Genet Med. 2017;19(3):267-274. 3. Kiernan MC, Vucic S, Cheah BC, et al. Amyotrophic lateral sclerosis. Lancet. 2011;377(9769):942-955. 4. Brown RH, Al-Chalabi A. Amyotrophic Lateral Sclerosis. N Engl J Med. 2017;377(2):162-172.